A Woman's Journey With Rare Disease

Why Are You Complaining? Some People Actually Feel That Way: A Critique of Me Before You

I first met Kim Sauder on Twitter. Shortly after, I started following her blog here on WordPress. She has articulated so well here my thoughts on the problem I have with Hollywood’s portrayals of disability in general. I have always had an issue with writing, media & film that portray a disability as something to be ashamed of or intimidated by. Kim outlines this so well here that I think most people may finally be able to understand why this issue is so upsetting to be excluded, stereotyped, & generalized this way in the media. That’s why I chose to reblog this post today. I have several thoughts going on my head but many of them just serve as resounding echo to the issues that Kim has raised here, so I’ll just let her words stand on their own & be taken in. I hope they will speak just as strongly to your heart & mind as they did to mine.

Warning: This post includes comprehensive spoilers for the book Me Before You, a book that deals with disability and assisted suicide. It also deals with sexual assault.

It has taken me months to get all the way through Jojo Moyes’ 2012 novel Me Before You. This protrated reading can be explained by two things. I’m a PhD student and don’t have a lot of free time for reading anything that isn’t directly related to my studies and the fact that this book made me feel violently ill. I hated it, well before I got to the ending. The only reason I finished it is because the movie adaptation is coming out next month and I felt the need to thoroughly explain why it is so problematic and why I find the excitement over the movie adaptation so troubling.

7 thoughts on “Why Are You Complaining? Some People Actually Feel That Way: A Critique of Me Before You”

I apologize for not knowing the correct terminology – please correct me in replies so that I can do better and be more sensitive and simply to learn.

I am put off a bit by Kim’s response to this book. I agree with her it’s not the literary triumph of the ages. But it is chick-lit and marketed as such. We can decide whether chick-lit as a genre should be critiqued another time (it probably should) but for now, taking this book for what it is, some of the in depth criticism is a bit overboard for me. There are good points to be made, but I think what I got out of the book was far different from Kim.

What I took from the book was the (in my mind) important message, one that Americans must start talking about, of assisted suicide. I was thrilled to have a book finally finally finally talk about assisted suicide being okay as a choice for a person who does not want to continue suffering.

The vehicle for this message was probably insensitively chosen as someone with Will’s disabilities. But to be honest, it’s one people can accept particularly because of those comments like “I’d die if I had to live like that.” Americans are starting to accept that someone with cancer shouldn’t necessarily have to continue living in pain and suffering as legislation is starting to allow us to let people make that choice. I think they can start to relate to the suffering and they can understand that wanting someone to stay alive and in pain, when that is not what the person wants, is cruel.

Now Americans are becoming aware of that same idea for reasons other than cancer. We are far behind our European contemporaries in recognizing suffering and the right to die. Not only are they able to understand that the right to die can be a choice for physical issues but places like Belgium and The Netherlands understand that the right to die can be a choice for someone with mental health illness. American’s aren’t ready for that discussion – we’re too full of “hope” that someone will magically get better from brain-based disorders that may not be treatable by any amount of medication or therapy.

I have not looked up why the author chose the specific disabilities she did to go with the narrative around a right to die – a narrative that almost has to be encased in something like chick-lit, something that abelists can understand and accept. I think cancer would have missed the point. I know that mental health illness is not one Americans are willing to discuss. I don’t know why this was the route she went, it was imperfect for all the reasons that Kim and others from the disabled community wrote.

I think I’m essentially saying the ends justify the means, which does horrify me to some extent. But part of me still wants to say it. I want to say that while the portrayal wasn’t done right, the outcome of bringing up death with dignity, assisted suicide, the right to die so more individuals in the abelist community can start to have a conversation is what I got out of it and what I felt meaningful despite all the flaws inherent in the book.

I would honestly like to hear from the community (I fully expect to get ripped to shreds because I know this is an abelist view). I was glad to see that the right to die was part of the book – instead of the happily ever afters of living a life of adversity being meaningful and worthwhile (one that I buck up against for my own disabilities). I guess what I’m saying is that Kim is right – it’s a bad portrayal of disability on so many levels – but I also think the ending was an important stride in any mass market literature, broaching a very taboo topic for that genre. We have a long way to go to get the narrative right. But I am actually glad this book is coming to film so the discussion of right to die can start in earnest.

there are two separate issues here Erin which i think will help people understand better. It’s a lot to take on & I can only speak for myself. First of all the portrayal of disability itself. It is primarily being used that Will as a character’s feelings & thoughts are secondary to the other main character. I feel that in a situation like this because such issues are not discussed or understood, Will’s character should be explored & put at the forefront, or ideally both should be equal. Care-taking is not an easy job, but neither is being in the position to need care-taking. It’s a partnership & unique dynamic unto itself. But because writing is so focused on not talking honestly about disability & that disability & difference are ok & not a source of shame, that’s bothersome. I’m not saying that Will should be happy he’s in the condition he’s in. I’m saying his life even as a quadriplegic is just as valuable to learn about other than how the main character is disgusted that she has to help him with certain functions.

The other issue I have is with the trivialization of assisted suicide. This is where it gets dicey. There are those of us who have had to have a real examination about this for ourselves for our situation. But this book makes it seem so simple to arrive at that choice. It’s not. It’s a decision made very cautiously yet deliberately by people who are not ashamed of their disability but who are angered because of their diminished quality of life & having to undergo extensive, invasive procedures & problems that do nothing to add to their quality of life or self-worth but simply prolong months they have left. There’s a huge difference in that. This theme is not explored. Furthermore the reason everyone is so divided on this issue is because people vary in their acceptance & views on disability for themselves but also on grief, loss, & end of life decisions. This book doesn’t explore anything past Will’s own anger at the accident that lead to his quadrapelgia, & it needs to because it’s a gross oversimplification otherwise.

I just get angry when Hollywood uses any of it as a plot device, casts actors who have no clue what any of this is like because they are not disabled; it’s just the same 10 people with names in Hollywood portraying every person’s story in America regardless of what it is. But I don’t like equating disability with euthanasia decisions because it’s comparing apples & oranges & does more harm than good. People don’t fight assisted suicide laws in the disability community because they don’t understand or aren’t empathetic. It’s actually to avoid scenarios like this where disability itself, just the mere acquisition of it is used to say that life is no longer worth living. I know that sounds extreme, but we know what’s happened with sterilization of women with disabilities before.

There’s dialogue to be had for sure, but it has to be open ended & rich. Not sterotyped & one sided.

Thank you. I think the first part that the aren’t talking about disability honestly or on an equal level is spot on. I think it’s very much how most chick lit is written, one dimensionally. And that’s not ok. It’s accepted in the genre but greatly diminishes it.

The second I really didn’t feel. I didn’t get the sense in reading it that it was an easy decision. I didn’t feel it was so trivialized. It may be again more one dimensional like the whole genre but I felt there was some honest thought in it. And I didn’t really feel that disability was equated with euthanasia but I can see how that can come across.

My disabilities are not as severe or limiting as many and I still get the “I’d kill myself if I were you” over too many things. I don’t feel like I have the opposite issue though, that because people can’t see my disabilities they can never understand the right to die. They know that what I go through is awful and the make jokes about dying if they had to do some of the things I do. But because they can’t see it, they think at the end my quality of life and the amount of suffering I go through are not worthy of death with dignity.

Which only makes the issue more complicated I guess.

It is truly a lot to consider on many fronts and the type of book it is means a lot wasn’t discussed in depth. I feel awful that the community feels disrespected so I’m glad to have your input to understand a bit more.

this is why it’s so hard for me. My disabilities were invisible for a long time, but then I went through a huge learning curve when they became more outward & apparent. I also went through a very hard period where things were happening so fast & I wasn’t sure I’d ever have a life outside a hospital room for more than a few days or months at a time. This is why I know I have a different perspective than someone else who from a very early age had very different & outwardly apparent disability & experience from mine. Especially if they were raised in a less than supportive environment or even if they were. I don’t say that to compare or contrast just state that’s why it’s so individualistic the reactions you may get on both sets of issues. If I can find it, at some point I will share a very eye opening post I did find here on their experience with Dignitas & just how involved it was, how extensive & gut wrenching that decision was for that person to even get approved to end their life on their own terms. Your analysis of chick lit is probably spot on which is why I don’t enjoy much of it :). I just don’t like stories that use disability to further stereotypes & tropes. then it takes off & becomes a movie which just perpetuates those same stereotypes over again. I get it’s a fictional story, but still. It’s just when you see it repeated over & over again & getting published & on best seller lists, it’s also a slap in the face to indie authors & film makers struggling to get the other side of the coin heard & they aren’t even given the time of day.

Glad to have this discussion, we all need to see different perspectives on this issue. Disabilities are complex and individual and at the end involve real people, not hypotheticals. Respecting each other is the key.